Rituximab treatment in autoimmune disorders

This leaflet aims to help you understand more about rituximab. It will tell you what it is, how it works and what it does to treat your autoimmune disorder.

Rituximab is a man-made antibody that was developed to target a specific protein called CD20. This is found on the surface of white blood cells called B-lymphocytes (B-cells).

B-cells are involved in the making of antibodies by the immune system but can also produce harmful autoantibodies (known as autoimmune disorder) which attack the body’s own cells and tissues, causing your symptoms. These include but are not limited to pain, swollen glands, tiredness (fatigue), rashes, nausea, and more.

The symptoms of an autoimmune disease depend on which part of your body that is affected.

Rituximab attaches itself to all the CD20 proteins it finds to mark them. Then it triggers the cells of the immune system to pick out the marked cells and kill them. Rituximab destroys both abnormal and normal B-cells. Once treatment is over, the body can replace the normal B-cells. Circulating B cells are replaced from bone marrow cells within 6 to 9 months after treatment or sometimes longer. This means that your immune system is suppressed and you are prone to catching infections.

Rituximab was originally used to treat lymphoma but is increasingly used for the treatment of autoimmune diseases. It works for several months to reduce inflammation and improve your symptoms. If you respond well to rituximab you will probably feel better within four to six weeks. The effects of rituximab usually last for between six and nine months.

Rituximab suppresses the immune system. Therefore, serious fungal, bacterial and new or reactivated viral infections (for example, hepatitis B or C, shingles) can occur during or after treatment. Generally, rituximab is avoided in the presence of active, significant infections. Alternative treatments can be discussed with your doctor if you are not able to have or are intolerant with Rituximab.

How is rituximab given?

Rituximab is given either in a single dose or multiple doses through a drip into a vein (intravenous infusion). It is administered in the haematology day unit by specially trained nurses. The first infusion takes around six hours and you will be monitored for any adverse reaction, although the following infusions will be a bit shorter. You will be prescribed other medications to reduce possible side effects from the infusion such as pain, fever and allergy.

Your consultant will determine if further treatment is required depending on your response to it. You will have a physical examination and blood tests prior to treatment and then further monitoring and blood tests afterwards.

Before starting rituximab

Rituximab is not given if you are hypersensitive to it, if you are pregnant or breastfeeding or receiving live vaccines. It is also not suitable if you have severe congestive heart failure. If you have any infections, either with symptoms or not, you should not be treated with rituximab. An alternative treatment will be discussed with your doctor.

Before starting rituximab, it is important that we do your blood tests, check your immunisation status and see how well your liver and kidneys are working.

What are the possible side effects?

Patients can respond differently to treatment. If you do have a reaction, it can then be treated quickly. If you feel unwell or have any of the following signs or symptoms, tell your nurse straight away.

Allergic reaction

This is most likely to happen during the first infusion, which is why it is given slowly over several hours. Before treatment begins, you will be given medicines to help prevent or reduce any reaction. Allergic reactions can include feeling hot or flushed, developing a skin rash, itching, starting to shiver, feeling dizzy, having a headache, feeling breathless, swelling of your face or mouth, or pain in your back, stomach or chest.

Risk of infection

This treatment can reduce the number of white blood cells in your blood (neutropenia) meaning you are more likely to get an infection. If you have an infection, it is important to treat it as soon as possible.

Bruising and bleeding

This treatment can also reduce the number of platelets in your blood (thrombocytopaenia). Platelets are one of the components of your blood that is responsible to stop you from bleeding. Tell your doctor if you have any unexplained bruising or bleeding. This may well include nosebleeds, bleeding gums or tiny red or purple spots on the skin that may look like a rash. Some people may need a platelet transfusion, which is given by intravenous drip.

Anaemia

This treatment can reduce the number of red blood cells which carry oxygen around the body (anaemia). If this happens, you may feel tired and breathless. If you are very anaemic, you may need a blood transfusion drip to increase your red blood cells.

Blood pressure

Your blood pressure may fall when having rituximab. If you usually take medicine to lower your blood pressure, your doctor may ask you to take this at least twelve hours before having rituximab. Sometimes, rituximab can make your blood pressure go up. Your nurse will regularly monitor your blood pressure to ensure it remains within safe levels.

Skin changes

This treatment may cause a rash, which can sometimes be itchy.

You may also notice unusual feelings in your skin. These include numbness, tingling and a burning sensation.

Tell your doctor or nurse about any skin changes. They can give you advice and may prescribe creams or medicines to help. Any changes to your skin are usually temporary and improve when treatment finishes.

Rituximab can interact with other medications including the blood thinning drug warfarin. You should inform your doctor before starting any new medications and you should also tell your GP and other treating clinicians that you are having rituximab.

It is not known whether rituximab harms an unborn baby or whether it is safe to breastfeed while undergoing treatment. If you are a woman thinking of trying to conceive in the near future, you must take steps to ensure you do not become pregnant while taking rituximab.

Long-term effects

Rituximab can be given on its own or in combination with other treatments. Long term side effects can vary from person to person. Factors affecting its long term side effects include the condition being treated; other medications or treatments used with; how long it has been used for; and the dosage you are receiving. You are advised to consider keeping notes about any side effects you are having and discuss with your doctor to adjust the treatment plan if needed.

Despite the possible side effects, rituximab is safe and well-tolerated by the great majority of patients. Millions of patients worldwide have received rituximab and reports of serious side effects are very rare.

Alert card

You will be given an alert card to say that you have received rituximab treatment and an emergency contact number. It is recommended that you carry a biological therapy alert card at all times. Then anyone treating you will know that you’ve had rituximab and that your antibody levels may be low. You can get this card from your clinical team.

Consent

We want you to be fully aware of what this treatment involves and have as much information as possible. If you would like to discuss potential side effects, or have any other concerns, please ask your clinical team. If you agree to have the treatment, we will ask you to sign a consent form.

Contacts and further information

If you have any questions or concerns, please contact:

Haematology Day Unit: 01223 254590 or 01223 217720 (Monday to Friday 08:00 - 19:00)
Haematology Specialist Nurses Ruth Jolley and Vivian Garcia: 01223 217717
Out of hours, please call the hospital switchboard: 01223 245151 and ask to speak to the haematology registrar on call.

Haematology consultants:

• Dr Martin Besser
• Dr Mark Robinson
• Dr Will Thomas
• Dr Emily Symington

References and sources of evidence

• National library of medicine (opens in a new tab)
• Macmillan (opens in a new tab)
• Medicines.org (opens in a new tab)

Privacy and dignity

Same sex bays and bathrooms are offered in all wards except critical care and theatre recovery areas where the use of high-tech equipment and/or specialist one-to-one care is required.